Ethan's story

From the very first blood test, we’d known that this pregnancy wasn’t going to be easy. I have a rhesus negative blood group and my husband has a rhesus positive blood group; this puts me at risk of having an immune reaction during pregnancy (known as rhesus disease). In rhesus disease, the mother’s immune system responds to the baby’s red blood cells and attacks them as if they are a foreign object. This can cause potentially fatal anaemia as vital organs become starved of oxygen. Although my first two pregnancies had been trouble-free, my third pregnancy had ended in miscarriage and there had always been a question as to whether rhesus disease had been a factor in our loss.

When I discovered I was pregnant for a fourth time and had the normal blood tests, the results came as a shock. They showed that there were antibodies already present in my bloodstream which appeared to be immune to the routine anti-D injections which were supposed to stop them developing. This is a very uncommon situation and I was told that this meant that I would need to be scanned regularly through the following months.

It was at five months into my pregnancy that the antibody levels rose sharply and I was referred to a specialist. She told me that the antibodies were at two and a half times the recognised danger level and I would need very careful monitoring. She also explained that it would be very unlikely that I would carry this pregnancy to term.

I attended hospital for regular check-ups and, although the antibodies remained at a high level, our baby was active and healthy, showing very little sign of any issues. This continued until I was 31 weeks pregnant when testing showed that he had become lethargic and the anaemia was at a dangerous level. A foetal blood transfusion was needed to try and reduce the effects of the anaemia and so I was admitted. It had been explained to us that the transfusion carried a small risk of delivery but we never really thought of this as a possibility.

I walked to the operating room and had a local anaesthetic in my stomach. A large needle was inserted to try and achieve the correct angle to administer the blood transfusion through the umbilical cord. This went on for about half an hour before I heard the consultant say that a blood clot had formed in the umbilical cord and they needed to deliver the baby. I was quickly put under general anaesthetic and Ethan was delivered by emergency C-section.

He wasn’t breathing and his heart rate was falling. He was given several ‘rescue breaths’ before being rushed to the neonatal intensive care unit. I was in total shock when I came around from the anaesthetic, all I wanted was to see my baby but we weren’t allowed to visit until he was stabilised.

We waited for hours in a total daze; we hardly spoke except to decide on his name (Ethan means “strong”). When we finally got to see our tiny son in his incubator hooked up to all of the wires and machines it was extremely traumatic. He was so still and I was very aware that the ventilator was keeping him alive in a way that my body had become unable to do. I sat in my wheelchair and sobbed my heart out, wishing that it was all a bad dream. Trying to sleep that night was so strange, I wasn’t pregnant any more but I didn’t have my boy with me either. Things became even harder when I was discharged just four days later and had to go home without him.

Ethan was in hospital for a total of eight weeks, much longer than many babies born at 31 weeks. He had lots of photo therapy for jaundice and repeated blood transfusions for his anaemia, but his biggest problem was his lungs. Despite coming off the ventilator relatively quickly, he found it hard to breathe on his own. He had very immature lungs and the anaemia made it hard for his body to cope without oxygen support. He slowly moved through the various oxygen options and was eventually strong enough to breathe independently. He was able to come home on 30 November, exactly eight weeks after he was born and just three days before his due date.

Ethan is now a happy and healthy two and a half year old. At first, he was a little behind on his milestones but he has now caught up on everything and is even measuring ahead in some areas. We are so proud of how far he has come. Sometimes I look at him and can’t quite believe he’s the same little boy I first saw in that incubator.